Posts Tagged ‘Compassion & Choices’

Sep 24, 20125 Reasons I Won’t Die the Way My Mother Did

By Erica Manfred
Next Avenue
September 21, 2012

When a parent dies, it’s common for surviving children to have a raft of regrets, from not spending more time with Dad to not telling Mom you loved her to failing to do more for them in their final years. Today there’s often one other regret in the mix — not protecting a parent from invasive end-of-life interventions.

Few of us die in our own beds now. Modern medicine keeps many of us living longer, and then some of us die by inches, in an ICU or on a ventilator, sedated or in excruciating pain, while others fade slowly with Alzheimer’s disease or other dementias. When my mother died 15 years ago, after much unnecessary suffering, I determined to keep her fate from becoming mine.

Mom was an extremely healthy and active woman who, until age 85, had few medical problems besides arthritis. In her mid-80s she displayed some memory loss, though nothing that inhibited her lifestyle. I suspected she was developing Alzheimer’s, as her brother had, but that she had many active years left. She also had a heart valve that needed replacing or she’d face serious restrictions of her daily activities, along with an increased likelihood of a heart attack.

She wanted the surgery, and it was a success. But then she had an allergic, near-fatal reaction to the valve, after which she went rapidly downhill cognitively and became unable to take care of herself and severely depressed. Two years later, when her kidneys failed, her doctor suggested dialysis, which would have gone against her living will specifying no further invasive treatments. I arrived at her Florida home just in time to refuse the dialysis. She died peacefully at home, under hospice care, two weeks later. We had spoken about her wishes, and I knew that’s what she wanted.

After my mom passed away, I realized that I had to begin to make hard decisions about my own death, when I was still relatively young and healthy, to avoid an equally drawn-out end. Jane Brody, a New York Times health columnist and author of Jane Brody’s Guide to the Great Beyond: A Practical Primer to Help You and Your Loved Ones Prepare Medically, Legally, and Emotionally for the End of Life, helped me craft these five steps, designed to increase one’s chances of a dignified death (although there are, of course, no guarantees): More

Sep 21, 2012A Graceful Exit: Taking Charge at the End of Life

by Claudia Rowe
YES! Magazine

September 19, 2012

I was standing in my cubicle, a 24-year-old fact-checker envisioning a publishing career of glamor and greatness, suddenly shaking as I read the document my mother had mailed. It detailed her wish that I promise never to keep her or my father alive with artificial respirators, IV-drip nourishment, or anything else she deemed “extreme.”

I was horrified, and slightly angry. My mom was a 54-year-old literature professor who’d spent the 1970s eating whole grains and downing vitamins. She was healthier than anyone I knew. Why get so dramatic now? It seemed ghoulish, not to mention premature. But I scrawled my signature at the bottom of the page and shoved it into an envelope, my mother’s voice in my head, prodding me along.

As with the whole wheat and vitamins, my mother—back in 1990—was onto something long before it became conventional wisdom. But these days, Americans’ approach to aging and death is rapidly evolving, pushed both by the numbers and the grim reality behind them: In 40 years, there will be 19 million Americans over 85, all at high risk of losing the ability to care for themselves or dwindling away due to organ failure, dementia, or chronic illness. (The days of a sudden fatal heart attack are fading; by 2008, the death rate from coronary heart disease was down 72 percent from what it was in 1950.)

So while many seniors now live vigorous lives well into their 80s, no one gets a free pass. Eating right and exercising may merely forestall an inevitable and ruinously expensive decline. By 2050, the cost of dementia care alone is projected to total more than $1 trillion.

My mom’s decision to face her end came not from any of these facts, but from the nightmare of watching her own mother’s angry decline in a New York nursing home. “You’re all a bunch of rotten apples,” Grandma growled at visitors, the words erupting from her otherwise mute lips. And there she sat for three years, waiting to die. “Why can’t you just get me some pills so I can go?” she would sometimes wail.

The slide toward death was only slightly less awful for my father’s mother. Grandma Ada would greet me with a dazed smile—though it was impossible to know if she recognized the person standing in front of her wheelchair—before thrashing with involuntary spasms. An aide would come to restrain her, and then my dad and I would leave.

This cannot be right. This cannot be what we want for our parents—or ourselves. More

Sep 18, 2012Going Gently Into That Good Night

By Daniel Krieger
Narratively
September 18, 2012

If you’re dying and don’t care to wait around for death, you can always book your own appointment. One simple way to do this would be to stop eating and drinking; another would be to stop life-sustaining medicine or devices. Assuming you can decide on your own, both of these methods are good and kosher as far as the law goes. A third approach, however, ventures into a grayer area of legal and ethical terrain—quaffing a lethal cocktail. In the business of ending your life, the means matter a lot more than the final result.

These were three things my mother, Ann Krieger, was pondering when she reached the final leg of her terminal illness last year, a month before Mother’s Day. After several years of fighting colon cancer, her doctor broke the news that the cancer had spread and the treatment was no longer working. There was no more they could do.

“You’ve got months, not weeks,” he said.

“What should I do?” she asked. “Should I end it now?”

“No,” he said. “You don’t want to do that.”

Actually, my mother kind of did, but the doctor referred her to hospice and gave her information about palliative care, a mode of treatment that relieves the pain of patients with serious illnesses. But in my mother’s case, the physical distress was less acute than the existential. Coming to terms with the fact that you’re going to die is elusive. For some people, like her, an attempt to manage the logistics could make it seem more doable. She and my father had given this some thought and had very specific ideas about how they wanted their end-of-life matters handled.

Six years earlier, horrified by what was taking place with Terri Schiavo in Florida, they sat my sister and me down to give us instructions. Should it ever come down to it, my parents told us, they wanted no artificial resuscitation, experimental procedures, machines or IVs—none of that stuff. They just wanted us to make sure they would be allowed to die naturally. “The idea,” my father explained to me recently, “is to be pain-free, comfortable and not go through a lot of unnecessary, costly and painful treatments which won’t help anyway.”

My mother had first-hand experience with this 21 years ago when her mom, my grandma Trixie, who was in perfect health at 85, was struck by a hit-and-run driver near her home in Queens. The doctors at New York Hospital said she had severe trauma in her brainstem and wouldn’t wake up. She was hooked up to a ventilator. More

Aug 21, 2012Assisted suicide: New Mexico court asked to redefine the term

By Diane Carman
DenverPost.com
August 19, 2012

The question before the court in New Mexico is absurdly simple and yet impossibly complex. What is the meaning of “assisting suicide”?

If a terminally ill patient refuses a ventilator or a feeding tube and the physician yields to that decision, is that assisting suicide? If the patient is in excruciating pain and requests total sedation and no nutrition or fluids, can the doctor be held accountable for his death? What if the patient seeks a prescription from her physician so that when the pain of dying is overwhelming she can seek the ultimate relief on her own?

Two oncologists from the University of New Mexico Health Science Center and a patient with advanced cancer are the plaintiffs in a lawsuit filed in New Mexico District Court designed to clarify the legal definition of assisting suicide. That decision, likely to come in the next year, could send reverberations through the medical establishment in the Rocky Mountain West and across the country.

Morris vs. New Mexico contends that the statute outlawing “assisting suicide” never was intended to apply to physicians treating patients in the late stages of terminal illnesses. The plaintiffs believe that “patients who are dying and finding themselves trapped in an unbearable dying process should be able to choose aid in the dying process,” said Kathryn Tucker, director of legal affairs for Compassion & Choices, a nonprofit organization that works to expand choices in end-of-life care. She is one of the attorneys representing the plaintiffs in the case.

Compassion & Choices advocates for physicians to be allowed to prescribe medication to mentally competent terminal patients who can administer the drugs to themselves “to bring about a peaceful death,” Tucker said.

The organization contends that it’s fundamentally different than the commonly held idea of suicide, which presumes that without the suicidal acts, the person would be able to live. Opponents say it is exactly the same, an affront to human dignity, false compassion and highly susceptible to abuse.

If anyone had asked 48-year-old Aja Riggs a year ago for her opinion on assisting suicide, chances are she would have supported it. “I would have said, ‘Sure, I think people have the right to choose at the end of their lives if they’d like a physician’s aid in dying.’ ” She’d never had a particularly keen interest in the issue, though.

That changed 11 months ago.

Now, the self-employed professional organizer from Santa Fe said, “It’s really important to me.”

Riggs was diagnosed with uterine cancer last August. Surgery in October revealed that her condition was at stage 3c, far more advanced than doctors had expected.

After she recovered from the surgery, she underwent chemotherapy, during which another tumor developed. Then she had radiation treatments and now is receiving chemotherapy again.

“When I was diagnosed, I decided I wanted the most aggressive treatment that’s going to be effective. I thought, if I can get another 20 years in this life or so, wouldn’t that be great,” she said.

But Riggs is realistic.

“If my disease progresses, more difficult individualized decisions will be coming up,” she said. “If this disease does look like it will end my life, I can’t say for sure how I will make those decisions. … I can’t tell you for sure that I would get that prescription, fill it and use it. But I absolutely want to have that choice.”

Morris vs. New Mexico is modeled on Baxter vs. Montana, which was decided by the Montana Supreme Court in 2009. In a 5-to-2 ruling, the Montana court said that physician aid in dying was protected under the law providing for living wills.The court said that the state’s Rights of the Terminally Ill Act “very clearly provides that terminally ill patients are entitled to autonomous, end-of-life decisions, even if enforcement of those decisions involves direct acts by a physician.”Laws on assisted suicide are the purview of the states. In a case challenging Oregon’s assisted suicide law, the U.S. Supreme Court ruled in 2006 that the federal government does not have the power to overrule state statutes in this area.

Colorado’s assisted suicide law states that it is considered manslaughter if a “person intentionally causes or aids another person to commit suicide.”

While the specific statutes across the country are not identical, states generally protect the rights of terminally ill patients to give advance directives and make decisions on their care at the end of life. Tucker, who was among the lead attorneys litigating Baxter vs. Montana, maintains that the long-standing statutes outlawing assisting suicide were never intended to apply to physicians providing end-of-life care for terminally ill patients.

These statutes were “enacted at a time when medicine didn’t prolong the dying process as it does today,” said Tucker. “It’s pretty clear that that was not on the minds of legislators who introduced or voted on these measures.”

Instead, the laws were aimed at people who might provide a distraught teenager with the means to end his life after a bad breakup, or the friend who helps someone make a noose after he lost his job, she said. “There is an appropriate role for these statutes, but I don’t think they have anything to do with aid in dying.”

Professor Robert Schwartz of the University of New Mexico School of Law said that the argument in the New Mexico case is that “the court should defer to physicians in defining what constitutes appropriate care.”No one is going to argue that a physician couldn’t, for example, prescribe palliative sedation. No one is arguing that a patient couldn’t decide not to take nutrition and hydration, at least under New Mexico law. That’s entirely the patient’s decision,” he said. “This is one of the arrows in the doctor’s quiver, one way to provide adequate care at the end of life.”The Colorado Medical Treatment Decision Act, signed by Gov. Bill Ritter in 2010, explicitly provides for persons to refuse medical treatment, nutrition and hydration, and to execute advance directives outlining the circumstances under which they want such measures to be taken on their behalf.

Tucker and Schwartz said that momentum for physician-assisted suicide is strong across the West. Legislation that legalized it in Oregon and Washington, along with the Montana court decision, have generated growing support for the practice, and both advocates and opponents are watching the New Mexico case closely.

The most outspoken opponents to physician-assisted suicide have been leaders in the disability rights community. Diane Coleman, president and CEO of the nationwide disability rights organization Not Dead Yet, said there already are sufficient means for terminally ill patients to end their lives without providing immunity from prosecution for physicians who prescribe lethal drugs.

“The risks to many outweigh the alleged benefit to the few,” she said. Those risks include people succumbing to coercion from heirs or other family members, or to pressure from health insurers who deny services needed to cope with limitations caused by their conditions.

Rather than assisting people in ending their lives, Coleman suggests that physicians should help patients access the support they need to live well.The public response to Aja Riggs’ stand on assisted suicide has been “overwhelmingly positive,” Riggs said. “People have said, ‘Thank you so much for speaking out on this.’”It’s important to remember, she said, that the only patients who would be allowed to obtain physician assistance in suicide would be those who are terminally ill and mentally competent.

“This is something the patient chooses and does for herself. It’s not the doctor doing it,” she said. “It’s not a choice between life and death. It’s a choice about what kind of death.”

Aug 20, 2012End-of-life planning choices should be in your control, says Compassion & Choices

By Evelyn Theiss
Cleveland.com
August 13, 2012

It’s never too early to think about the end of your life.

That’s the philosophy of Compassion & Choices, a national organization that was created in 2003, after the merger of what was once known as the Hemlock Society and a group called Compassion in Dying.

The question isn’t one of suicide, says Barbara Coombs Lee, president of the national group, which splits its headquarters between Portland, Ore., and Denver.

“It might just be about discontinuing extraordinary measures,” says Lee, who is based in Portland. “Having the conversation about what people want is what we help them with.”

Cleveland used to have its own chapter of Compassion & Choices, but its former volunteer leader recently retired.

The national chapter, however, offers extensive information on its website (compassionandchoices.org), including state-by-state versions of living wills. It also offers one-on-one counseling with trained volunteers, most of whom have professional experience in medicine or social work, by phone.

Dr. Stuart Youngner, chairman of Case Western Reserve University’s Department of Bioethics, says that while Compassion & Choices “might be sympathetic to physician-assisted suicide . . . their main thing is that people should have control.”

Physician-assisted suicide and outright euthanasia remain controversial issues for some in our country today, says Youngner. Yet the majority of people believe that a person has the right to refuse life-sustaining treatment and the right to insist that it stop if it’s been started already.

Youngner, an expert on end-of-life issues, says that people who want more control over how they die don’t usually want it because of pain. “It’s because they don’t want to exist as they are existing, even if their pain is controlled,” he says. “We see this especially in the upper-middle class. They are used to being in control of their lives, and to making decisions.

“One of the arguments against physician-assisted suicide and euthanasia has been that it will [disproportionately] encourage poor people to want it, and that has not been the case.”

Just because you don’t have access, or the means, to make the end of your life more comfortable doesn’t mean that you want to hasten the end.

We talked with Compassion & Choices’ Combs Lee about the mission of her organization and how it prompts people to begin thinking and talking with family members about how they want the end of their lives to unfold.

Combs Lee was a nurse and physician’s assistant for 25 years before starting a career in law and health policy. She is also a lawyer. She became the president of Compassion in Dying in 1996 and remained in the post of president after the merger.

What inspired you to get into this field?

I came to the issue in 1990 when I was serving in a staff position in the Oregon State Senate. Frank Roberts, a senator and a person of enormous stature and respect, the conscience of the Senate, was trying to get death [with] dignity legislation passed. He was dying of prostate cancer. He also was married to the governor. The legislation failed.

Today, though, Oregon is one of the states with legislation that allows people to be able to choose a peaceful death, with the help of their physician.

But you say this is not about assisted suicide, correct?

No, it is not. What we are saying is that in any jurisdiction there is no reason to die alone, or in pain. Everyone can have a peaceful death, but it takes planning and forethought. And you are never too young to think about this: Terri Schiavo and Karen Ann Quinlan were young women. [Both women had family members fighting to take them off life support.]

What we’re saying is, most people tell us that they want some say about the end of their lives. Many of them say they don’t want to leave a legacy of pain, or delirium or a dramatic death. Those are not comforting deaths for their family members. It’s torture for their families.

Tell me a little about the people who call your toll-free number for counseling.

We field thousands of inquiries every year, and sometimes it’s a very simple conversation. Perhaps they’re on dialysis and they are not in pain, but they just don’t want to go on this way. We might say, “Well, have you talked to your doctors about what would happen if you stopped?” That’s what [humorist] Art Buchwald did. And he ended up living for many months in hospice and writing about it.

People have control over their lives, and they don’t know they do. Sometimes they call to say they’ve been through three rounds of chemotherapy, and wonder if they should have a fourth. We’ll have them consider how it will help, how much their life will be prolonged, what the statistics say about what percentage of people it helps, to help them make an informed decision.

What happens when people get a feeling of control back?

It’s empowering them in their lives. It’s a relief for them to talk about it, to make decisions based on what they want. Some people just decide to discontinue, or to forgo, extraordinary measures.

Sometimes people decide to stop drinking fluids and eating. Is that painful?

Hunger pangs eventually go away within a day, and you can address thirst with good oral care. More people stop eating and drinking in Oregon than use “aid in dying” each year.

It’s not a new thing. That’s what happens when people are dying or their illness advances — their appetite wanes. People get food forced on them, and maybe they don’t want that. I’ve had people say, “I know this will cause my death, and that’s OK because every day is more miserable than the day before.”

To stop taking in nutrition is perfectly legal, in every jurisdiction and in hospitals because the Constitution protects us from unwanted bodily invasion. People may not know to assert the right to be free of bodily invasion. But getting a psychological evaluation is always a good idea, so that your family knows, “Mom is mentally capable of making this decision.”

If people want to die at home in their own bed, instead of in a hospital, are there medications you advise them to have on hand?

People can accumulate medication, but we don’t encourage them, or urge them, to do that. We tell them, “We hope you don’t do this.” Sometimes, they tell us, just having it is enough, so that you can live better each day until your natural death.

What people want is to not feel like victims anymore. And some of them might have been tempted to do something violent, with a gun, or jumping to their death, and this deters them. They’ll say, “I want my grandchildren at my bedside — I don’t want to leave them with a horrific image.”

You say your organization is for a particular group of people.

Yes, it’s for people not in denial about their approaching death. They have to accept it enough to anticipate it and want to exert some control over what it will be like, not just for them, but the people who love them.

How do doctors react to patients who want to exert control over the end of their lives?

So much of what happens in medicine in cases like this is communicated in winks and nods. We also tell people how to talk to their doctors. With some doctors, and some hospitals, you don’t want to say anything like “I want to die.” Some doctors and religion-based hospitals consider that a mortal sin.

We tell people to just talk to their doctors about how the treatments they are getting are affecting their quality of life. It’s a bizarre dance of language you have to engage in.

For example, it’s OK to disconnect a pacemaker to relieve suffering, but not to intend death.

How would you describe the people who turn to Compassion & Choices?

They are not suicidal, and it would be an affront to them to call them that. They are not depressed, they are not mentally ill, they don’t have self-destructive impulses.

They are thoughtful people who do not want to act alone or in anger — they want to act in concert with people who love them. It’s called “aid in dying” because these are people who are already dying.

Newer Entries

Older Entries